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How I deal with deteriorating vision

October is Blindness Awareness Month thus providing a perfect opportunity for me to conduct my first interview — with myself.

Question: What is your eye disease and why do you wear glasses if you are blind?

Answer: There are many forms of blindness, my condition is called retinitis pigmentosa, or RP. Basically, it’s night blindness with deteriorating peripheral vision. Until recently, my central vision was pretty good, except I’m nearsighted so I need glasses to see far away. Most people with RP describe it as looking though a tunnel, or tunnel vision.

Q: When were you diagnosed?

A: In 1982, when I was 17, I went to an optometrist and insisted I wasn’t leaving until he heard my entire story. Luckily, the doctor was fresh out of medical school and knew about RP, referring me to a retina specialist in Milwaukee.

Q: How did you handle the news?

A: It wasn’t easy, for sure, but it was a relief to finally have a diagnosis and put a name to it. From there I was able to do my own research and prepare for the future.

Q: What was it like growing up not having been diagnosed yet?

A: Most of us who have RP agree trick-or-treating really stands out as a time when we knew we were different. Trying to navigate the steps to the front door of each house in the dark was no easy task as the other kids ran ahead to the next house. RP really became an issue for me in high school because I was involved in marching band or other activities which took place at night.

Q: Were you able to drive?

A: Yes, I drove for 15 years but usually only during daylight hours. I stopped when I came to a stop sign one day and wasn’t positive it was safe to continue. I was 30 the day I hung up my car keys for good.

Q: Do you miss it?

A: Of course, but I always knew I would have to give up driving one day. I didn’t want to be one of those people who had an accident before they were forced to stop driving. Believe me, those driverless cars we’ve been hearing so much about lately cannot come soon enough.

Q: When did you start using a white cane?

A: About five years after I stopped driving. I had reached a point where I was frustrated bumping into things and people at the mall or any public facility. What really scared me was when I almost stepped on a baby crawling around on the floor at a store. Once I started using the white cane, however, I realized people could see me coming and get out of my way so it made my shopping experience much less stressful — not to mention it was safer for babies.

Q: What are some other tools you use to cope with having RP?

A: Technology has been a godsend, especially with the new smartphones with voice activation and audio text. Personally, the ebooks are terrific. I have read more books in the past six months on my tablet than I have in the past 20 years. I also belong to two online groups consisting of blind people where we share ideas and provide support we can’t get anywhere else. Of course, relying on my faith has been the foundation of coping with RP because without my faith, I have nothing.

Q: You and your husband have two kids; How did you two decide to start a family?

A: Early on in our marriage, my husband and I attended a conference for people with low vision and were inspired by other families where at least one parent was blind. I have to give my husband a lot of credit because he was on board 100 percent when it came to helping with the kids after work. Plus, he had to do all the grocery shopping and doctor appointments. We purposely bought a house only a block from the elementary school so I could walk the kids to and from the school. With a daughter now in college and a son in high school, I’m very proud of being a stay-at-home mom and thankful for my husband’s support.

Q: What is the hardest part about having RP?

A: For me, it is adapting to new vision loss. Just when I get used to doing something one way, my sight changes and I have to figure out a new way to do it.

Q: What’s the one thing you wish people with normal vision would understand about your condition?

A: How exhausting limited vision can be because we are constantly scanning the area to figure out what’s going on around us. I take at least one nap a day to give my eyes and brain a rest.

Q: What advice would you give to someone who has been diagnosed with RP?

A: Focus on what you can do, not what you cannot do. Surround yourself with supportive people and distance yourself from the naysayers. Everyone has obstacles put in their path, whether it is blindness or something else. Your job is to find a way around it.